How Can Patient Advocates Help on Your Health Care Journey?

Q. I recently came across a Next Avenue article where a 72-year-old woman was told she had a benign brain tumor and needed surgery. The surgery was supposed to be simple, and the family was told she’d recover quickly, but things did not go as expected. Once a healthy, active woman, the patient suffered from memory loss, confusion, and headaches, among other things. Her mobility was fine before, but post-surgery, she required a walker to remain steady. Upon release from rehab, the occupational therapist said she could never live on her own again.

The family was convinced something wasn’t right but didn’t feel comfortable or knowledgeable enough to confront doctors or hospital staff. This is why they hired a patient advocate, who had been a nurse for many years prior. She led the way to a new, more accurate diagnosis, and suggested a suitable treatment. Not long after the advocate’s suggestions were followed, the patient was back to normal and defied her original prognosis. The family felt they couldn’t have done it without the help of the patient advocate.

I found this to be particular interesting, because it sounds somewhat similar to my situation. My mother is often in and out of the hospital. I have trouble understanding the medical jargon that is often presented to me by doctors and medical staff, and as a typically subdued introvert, I don’t feel like I’m much of an advocate for her. What are all of the things that patient advocates normally do to help patients receive appropriate care? How can I find the best advocate when I read somewhere that no licensing is required? What role does the elder care attorney play? Thanks so much for your help!

A. Navigating health care can be stressful and overwhelming, particularly for older adults facing increasingly complex health needs. The American Psychological Association reports that patient distress is most common following a diagnosis. Often, responding to a diagnosis or managing a chronic condition involves coordinating care with multiple providers and working with insurance companies, which are things that can cause extreme stress during a challenging time with a sick relative.

When someone struggles to assert their needs or feels confused by the health care system, patient advocates can provide crucial support. Keeping the patient’s best interests at the forefront, a patient advocate’s goal is to help make the journey through the health care system as smooth as possible while providing patients (and, when appropriate, their caregivers) with the support and education needed so that they can make the best educated decisions about patient care and next steps, all while working to ensure that the patient receives the best available care.

A Patient Advocate Helps Ensure Patients Receive Good Care

An example of a patient advocate is Danielle Walley, a nurse for more than 20 years, who knows all too well how difficult it can be to understand medical terminology, diagnoses, and jargon. She also knows what it’s like when patients visit their practitioner’s offices or hospitals alone and are nervous about what is to come. She understands how patients can often feel helpless because they have no one who will speak to medical professionals on their behalf, to ensure that their wishes are met, and that the best course of action is taken. This is what prompted Walley to become a patient advocate.

As a patient advocate, Walley accompanies her clients on their visits to medical providers and helps them understand options, next steps, and continuing options with the goal of maintaining optimal wellness. As a nurse, she provides them with the resources they need to deal with their sometimes life-altering situations. Besides being there to advocate for her clients, she also hopes to empower them to take initiative in their own care and combat the insecurities that may come with their diagnosis. According to Walley, “(m)y goal is to make them feel they are protected and safe while in my care, whether it be as an advocate or in patient education.”

Who Needs a Patient Advocate?

All patients who are not medical professionals, particularly patients who are elderly or infirm, may at some point need someone in their corner who fully understands them — their needs, fears, challenges, and experiences — to give them a powerful and knowledgeable voice. This includes education, diagnosis and treatment options, awareness, and access to care.

Role of a Patient Advocate

Patient advocates can help with tasks that may be challenging for someone facing a severe illness or a life-changing diagnosis. Here are just a few of the functions of a typical patient advocate:

  • Before a medical appointment, a patient advocate can assist with completing paperwork and verifying insurance coverage.
  • Before a medical appointment, a patient advocate can work with you to help come up with a list of questions for the health care provider.
  • When attending medical appointments, the advocate can listen to the health care provider, ask questions, and take notes for later review with the patient.
  • After a medical appointment, a patient advocate can help the patient understand the health care provider’s instructions and manage treatment.
  • After a medical appointment, a patient advocate can help file insurance claims, help obtain insurance preapprovals when needed, and help dispute insurance denials.
  • For someone in a hospital, a patient advocate can help ensure that a discharge does not happen too soon, can help appeal an unsafe discharge, and help ensure that the discharge is appropriate, whether back to home or to an appropriate rehab facility when necessary.
  • For someone in a hospital or a rehab facility who is going home after a significant medical event, a patient advocate can work with the family to ensure they have the resources and assistance they need to bring the patient home and to care for them safely at home.
  • A patient advocate can oversee care for people who are in a nursing home, rehab facility, or specialty care facility.
  • A patient advocate can work with the family to provide scheduled visits to monitor the patient’s care and report back their condition to the family.
  • A patient advocate can help ensure that the patient understands the plan of care and any changes to medications.
  • Some patient advocates specialize in certain type of care or specialize in certain activities such as disputing hospital bills or dealing with insurance companies.

If you are struggling to make a medical decision, consider working with a patient advocate who is trained in patient rights and whose job it is to focus on your interests and your interests alone. Working with a patient advocate can help you articulate your values, beliefs, and intentions, and help you decide which actions can be taken to ensure your wishes are followed.

Who Can Be a Patient Advocate?

A family member, a close friend, or a hired professional can fill the role of a patient advocate. Although there is no formal licensing for professional patient advocates, they should generally have a background as a health care provider — typically a nurse or a medical social worker or a related profession.

How to Find a Patient Advocate

You can find patient advocates via our website using the links below:

Many patient advocates work as Geriatric Care Managers, also known as Aging Life Care Specialists. Other resources are listed here on our website and are often members of professional associations such as the National Association of Healthcare Advocacy or Greater National Advocates. Asking about relevant experience and checking references are critical. Fees can be hundreds of dollars per hour, although some patients with chronic conditions may qualify for free services from the Patient Advocate Foundation. If your loved one is a veteran, the Veterans Health Administration Patient Advocacy Program is for all veterans and their families who receive care at VA health care facilities. Please note that when looking for a patient advocate, be cautious of scammers. Be wary of people who seem to be making unrealistic promises or are pressuring you to take certain actions.

Should You Use Hospital-Employed Patient Advocates?

Many hospitals have on-staff patient advocates. But be cautious, as a patient advocate employed by the hospital may obviously have divided loyalties even though they are supposed to be putting your interests ahead of their employer’s interests.

You can also be your own advocate. Please read today’s Critter Corner for some helpful tips!

How an Attorney Can Help

While patient advocates can help greatly with the basic tasks of navigating the health care system, many experienced Elder Law attorneys can assist with specific legal issues such as eligibility for, and qualifying for Medicaid, fighting improper discharge notices, and many other legal issues. Many Elder Law firms, such as the Farr Law Firm, also employ one or more patient advocates. Elder Law and estate planning attorneys, such as those at the Farr Law Firm, can also help you create an incapacity plan as part of your estate planning, which includes planning health care decisions. Having an attorney and ensuring that your legal documents are in order, in addition to a patient advocate, can provide an extra layer of support and protection.

Plan Now for Long-Term Care

If you or members of your family have not done Incapacity Planning or Living Trust, please contact us as soon as possible.

In addition, if you have a loved one who has been hospitalized often, it may be time to consider long-term care options. Long-term care costs $12,000 – $17,000 a month in the Metro DC area, which makes it imperative to plan in advance!

To protect your family’s assets from these high costs, the best time to create your own long-term care strategy is now. Generally, the earlier someone plans for long-term care needs, the better. But it is never too late to begin the process of Long-term Care Planning, also called Lifecare Planning and Medicaid Asset Protection Planning.

If you have a family member nearing the need for long-term care or already getting long-term care or if you have not done Long-Term Care Planning, please call us as soon as possible to make an appointment for a consultation:

Elder Law Fairfax: 703-691-1888
Elder Law Fredericksburg: 540-479-1435
Elder Law Rockville: 301-519-8041
Elder Law DC: 202-587-2797

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.